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newly digagnosed with CVID at age 62

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Old 09-22-2011, 07:00 AM   #1
Join Date: Sep 2011
Location: Irmo, SC US
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Grannie49 HB User
newly digagnosed with CVID at age 62

Hi everyone. I have been suffering from a severe parasite infection for nearly two years now and was recently diagnosed with CVID with low immunoglobulin G , Qn serum levels. My allergest wants me to take the IVIG treatment by monthly shots and I am absolutely scared to death to have the product put into my body. I have not taken the Paromomycin (Humatin) persp for the endolimax nana & dientamoeba fragilis parasites which were both found in my stool but I am getting ready to do that and to begin a very aggressive treatment with a product called ImmuneV in the hopes of maybe turning my scores around over the next few months. I also have a Meningioma (benign) brain tumor which they were only partially able to remove because part is inside the skull and part is outside the skull so because of this I am also a bit leary of doing the above treatment. I have arthritis and carpal tunnel in both of my hands so I am hoping to find someone who could give me the shots (any suggestions?) as I don't know if my insurance will pay to have a nurse come to my home and give the shots. Has anyone used ImmuneV and any comments on the product? I have told my Allergest that I will come back in Dec. to have tests run again and then we can discuss the injection treatment again. Any information or suggestions would be greatly appreciated. This is my first post.

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Old 11-30-2011, 01:40 PM   #2
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Re: newly digagnosed with CVID at age 62

Hi there. First - they are not shots, IVIG stands for Intravenous Immune Globulin - its doen by vein and can take anywhere from 3-8 hours each time. I've never personally heard of ImmuneV. If you have CVID - nothing but IVIG will help. There is no way to "boost" an non existent or broken immune system - IVIG is "replacing" what you are deficient in - IgG. There is absolutly no reason to be scared of it, it is very safe. It will help lessen the frequency and severity of your infections. Hang in there

Old 11-30-2011, 04:27 PM   #3
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markincleveland HB User
Re: newly digagnosed with CVID at age 62

You said, you want to "begin a very aggressive treatment with a product called ImmuneV in the hopes of maybe turning my scores around over the next few months."

Sorry, but I'll be blunt. Thinking any drug will permanently raise you IgG is like thinking there is a product that someone who has had a hand amputated could take a drug and somehow have the hand regrow.

If you physician has correctly diagnosed you your immune system is broken or nonexistent. It isn't coming back.

Before you invest you money and risk your health on ImmuneV, Were it me, I ask them if they have any peer reviewed research on its safety and effectiveness. Whenever I talk to someone who wants to try and unproven therapy, I ask, why would my insurance company have paid for over 350 of my infusion for the past 30 years if something far less costly. My infusions cost my insurance carrier about $8,000 eaqch and I was diagnosed in 1978. I'm now 63.

My last advise is to try and find a qualified IMMUNOLOGIST to treat you. Many allergists try and treat this illness, but patients of physicians who have had a fellowship, specifically in clinical immunology, consistently have better outcomes. Finally, make sure your physician has performed a vaccine challenge test. It is part of a complete diagnosis. If you decide to get IG therapy, in order to have medicare pay for it when you go on it in a few years, you will have had the test. After you have started IG therapy it is too late. To do the test later you will have to go off IViG for at least 6 months.

Good luck, I've been on IViG for the past 340+yest with absolutely no problems.

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